Ethics Forum: Righting the Wrong Diagnosis

A 54-year-old woman is establishing care in your clinic after retirement of her previous rheumatologist. Your review of her records suggests that she was diagnosed with systemic lupus erythematosus seven years ago on the basis of symptoms of body pain and fatigue, and serologic evidence of positive ANA 1:40 (speckled) and borderline anti-SSB antibody. She is currently on hydroxychloroquine 200 mg BID and prednisone 5 mg daily. She has hypertension, well controlled with amlodipine 5 mg daily, but has otherwise been healthy. Her body pain and fatigue resolved after she quit her stressful job.

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During the clinic encounter, you notice that she is wearing a Lupus Foundation of America T-shirt and learn that she is a leader of a lupus support group in her community. You were planning on discussing the possibility of her not having lupus but now are hesitant to bring up the conversation.

Discussion

Establishing a rheumatic diagnosis can sometimes be challenging, especially in patients with vague symptomatology and a paucity of clinical and serologic findings. Considering the potential toxicity profiles of anti-rheumatic agents, a questionable diagnosis can be detrimental to a patient’s health.

A Lupus Foundation of America study involving 3,022 individuals found that 41% of patients with musculoskeletal symptoms were initially misdiagnosed as not having lupus, even though 76.5% of those patients had discussed their symptoms with a rheumatologist. In addition, 40% of the patients were given a diagnosis of lupus more than one year after onset of symptoms.1 Further, a study published in 2017 focusing on rheumatoid arthritis patients showed the median time from symptom onset to treatment was approximately one year, with a range of four to 24 months.2

These studies highlight the fact that making an accurate diagnosis is difficult even with rheumatologic conditions common to our profession and even in the hands of an experienced rheumatologist. In light of the aforementioned evidence, we, as clinicians, will be confronted by discussions with our patients about possible misdiagnoses and the potential for discontinuing associated pharmacologic treatment that they may have been receiving for years.

The imperative for accurate diagnosis and treatment is elaborated by the ACR Code of Ethics, which states: “Members shall be dedicated to providing competent medical care with compassion and respect for human dignity and rights, and shall regard responsibility to the patient as paramount.”3

Our duty is to meticulously evaluate the available data before accepting or rejecting an already established diagnosis.

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